Wednesday, 1 January 2014

Blog: January 2014

31st January

1 hour after the Topotecan finished, the Vincristine & Doxorubicin were started and they both run for 48 hours continuously.

Before rafael could start this cycle, they had to check his heart and also how much Doxo he'd already had in 2008 and this drug can damage your heart.

There is another drug they can give with it, that costs $50K!! But if Rafael get's it, it will be with the next cycle.

3 pumps going for 48 hours :-( 

30th January

Day 4 - no nausea or anything yet - lot's of boredom ;-)

29th January

Day 3 of chemo. All good :-)

A few friends of mine popped in to visit and keep us company :-)

28th January

Rafael was "kicked off" the ward to day ;-) 

to cut a long story short - Days 1 - 5 are usually outpatient, but Dr Michael wanted him inpatient so that they could keep an eye on his kidney function and nausea.

The other Dr who was on rounds disagreed and said he should leave!

Instead, he was transferred to another part of the hospital called "care by Parent". It's like a mini hotel. Rafael loves it! he's disconnected after chemo and is free to roam the hospital. His room overlooks the Meerkat enclosure :-)

27th January

Rafael was admitted today for a 7 day stay. He is starting a new chemo trial - TVD. It is used in Europe for children who fail to respond to frontline treatment. it's much higher doses than he's been having for the last few months and will knock him about a lot :-(

"Patients receive topotecan hydrochloride IV over 30 minutes on days 1-5 and vincristine IV continuously and doxorubicin hydrochloride IV continuously over 48 hours on days 5 and 6"

He was connected and started in Day Oncology, the Topo is very quick, only 1/2 hour with a 15 min flush :-)

Afterwards we were transferred to the ward, but it was full, so they put us in the transplant section, which is really strict about visitors and has air lock doors. Was weird to be there ;-)

I created a Facebook Page today so that all of my status updates could be off my own page ;-) 


23rd January

Whilst Rafael's kidney were very hydrated, he also had a GFR (kidney function test)

Duncan from Nuclear medicine came up to the room and gave the "stuff" We love Duncan ;-)

22nd January

We had to be at RCH early this morning for Rafael to have more Bone Marrow Aspirates. He has a general anaesthetic for these. Basically, they use an "apple corer" to dig into his hip bones and draw out both bone marrow and trephine (boney part)!!!

Rafael was then admitted for 24 hours of hyper hydration, to test if his kidneys can cope.

It was easy, but as you can imagine - he had to pee a lot ;-)

19th January

We all went to pick up Lela from Camp :-) She even gave us a hug!!! What did they do to my daughter???? ;-) She had lots and lots and lots to all about - all of the fun she had! Wish I could go on Camp :-(

18th January

Dom took Rafael in to RCH today and Jessy was already expecting them. For some reason, the Dr ordered 400ml of blood, which is 2 bags, so it looked like the day was going to be very long. They started off with platelets and I reminded Dom that last time Rafa had a reaction, so Jessy ordered antihistamine just in case. Rafael started sneezing towards the end and got a slight rash, but it passed very quickly.

After some discussion, the Dr agreed to use only 1 bag of blood, since Rafael is being admitted on Wednesday anyway and they can monitor him again.

So, not such a long days after all ~ 6 hrs :-(

17th January

I set off early at 7am to avoid the traffic as much as possible. Today’s forecast is 44C – insanely hot!

I had a good run down to Phillip Island and it only took 2 hours :-)

Since I was there so early, I caught up with Jude Donahoo from YAMS and we had a lovely breakfast :-)

I had to pick Rafael up from the beach where they were doing surfing and rock pooling. He was adamant that he wasn’t going to do any of that!

So when I finally found him, he wasn’t even in his bathers, he was with one of the companions, resting under a sun shelter ;-)

I told him that I wasn’t in a hurry to leave. It was already hot and I convinced him to come with me to get our feet wet. The water was cool (not freezing) and after being splashed by a few waves, Rafael ended up in the water fully clothed ;-)

He was having so much fun then, I felt bad to drag him out :-(

I saw lela briefly, she was having surfing lessons :-0 Before I left I saw her get up on the board twice :-)))))

As a trade off (and since we were in the area) we went to visit our Pug friends at Saffron on the Hill :-)

Rafael’s legs are covered in bruises and I won’t be surprised if he needs platelets too this time!

The dogs were all so excited to have visitors. Rafael got lots of cuddles with his favourite girls – April Ann and Granny Giggles :-))))))

 Bob even put on his squishy face!

We made it to RCH just before 4pm and were in and out in 10 minutes, I got them to do the crossmatch blood test too, to save time tomorrow ;-) Home by 4:30pm. Just in time for the cool change to arrive – the display in my car read 50C!!!!

Bree from Day Oncology called to say that Rafael’s haemoglobin is 71 and Platelets only 18 – yep – he needs transfusions of both tomorrow

15th January

Gabriela and Rafael left for camp today with Camp Quality. The camp is for 5 days and this year it’s on Phillip Island.

Unfortunately, Friday is the day that Rafael’s blood counts usually drop, so he can only stay for 2 nights. I have to drive down there on Friday and pick him up :-(

He doesn’t want to go to camp – he says he won’t have any fun and doesn’t know anyone ;-) I still made him go!

14th January

As expected, with such hot temperatures – the power went off tonight. It was nearly 9 pm and still 40C outside, so we set up the Slip’n’Slide and the children ran under the sprinkler to keep cool :-)

13th January

We are lucky our friend has a pool :-) This week is going to be extremely hot – every day over 40C!

Today was cooler at 35C, so I took Rafa and Lela for a swim there at the end of the afternoon. It turned into an impromptu dinner as well :-) Dom came over after work and the children swam until late – priceless!!

10th January

Yeah, the last day of oral chemo :-) Rafael didn’t vomit any today :-)

Rafael’s BFF Kane came in with us today to keep him company.

Today was a bit longer as Rafael also had a 20-minute infusion of Zolodronic Acid (helps bone pain).

Once that was all done – we were outta there!!!!! Yeah ;-)

9th January

Lela bailed on us again today – no school holiday fun for her either :-(

When she found out that we had to go to RCH every day for the rest of the week, she called Nanna and asked if she could stay there ;-)

I ran into another NB Mum today, so I left Rafa in the quiet room and chatted to her – wasn’t so boring for me ;-)

8th January

Quiet day today, just Rafael & I. Lela stayed home with Dom, as it’s his work from home day :-)

We managed to get the Quiet Room and he just watched Minecraft videos on YouTube – very quiet indeed ;-)

I think I was having a “bit of a meltdown” in the evening and sat down and wrote this piece on my Facebook page

Our “Smiley” Boy’s reality

Yes, Rafael is always smiling for photos. I think he’s just used to me taking a million pics ;-)

This morning I had to give him 5 capsules of chemotherapy, at least 2 hours after he’d last eaten.

That meant that I had to wake him up by 10 am so that he’d finish breakfast by 10:30 and I could give the chemo at 12:30 pm before heading into the hospital for his 1-½ hr infusion of another chemo!

The capsules are tiny, about the size of a Tic Tac. Although he’s had many, it never gets easier – yet he never complains. He hates it and gags every time; I always think he’s going to vomit them back up!

Well today he did, after the 2nd one, yet he has to take them! :-(

So what does any caring, loving parent do?? Has to hold their son’s mouth shut, vomit and capsules inside until he can swallow it back down!!! :-(

What kind of parent does that to their child??? I HATE that we have to live this life, but I hate the thought of what the cancer is doing to our Warrior more!! 

He took it all in his stride, swallowed, drank water and continued to take the other 3 capsules :-)

He is really upset that’s he lost his hair – again! Yet, after much cajoling, I used the clippers last night to even it up and try to shorten what was left. Why bother you ask? Because every morning when he wakes up, it’s on his pillow, his pyjamas and in his mouth. The shorter it’s cut, the less in his mouth.

Rafael copes amazingly well with driving into to RCH every day. He never asks why me? Sometimes he does ask, “When will my Cancer be gone?” :-((((((

Oh Rafa – I wish I could tell you the answer!! Maybe yesterday, maybe tomorrow – until your next scans – we just don’t know

Rafael has a very strong disposition and his opinions are made clearly!! We often describe him as our OCD boy – even though he’s not (technically!)

He has simple tastes and needs – meat and mashed potato and Minecraft!!! Did I mention that Rafael’s whole life revolves around Minecraft??? He loves it! Plays it endlessly and when he’s not, he’s watching YouTube videos of BajanCanadian – arrrghh!!

Hehe – whatever keeps him happy.

I just went online to check his weight/height and he’s 2nd percentile – yeah – he’s on the charts!!! Even his BMI is good 14.2 – healthy! But he’s so tiny!! Someone at the hospital on Monday asked if he was excited about starting school this year – I looked at her and said, “Yes, he’s excited about Grade 4!!”

Anyway, sorry for the rant, just wanted to let you know that Rafael really is a Warrior and he takes it all in his stride, vomit and all:-)

7th January

Smooth day today :-)

Both Lela & Rafa wanted Chicken Teriyaki again. This time I ordered Rafael’s without the vegetables and he ate most of it!! This week is going to send me broke if they keep eating that much :-(

6th January

Back at RCH for another week of Irinotecan/Temozolomide.

We came in early (ish) to check Rafael’s blood counts and collect his oral temozolomide pills to start the week off.

As usual – everything took forever and we had to wait in outpatients for the Dr to sign off on the chemo and then for the pharmacy to dispense it!

We saw Dr Marty today as Dr Michael was out of the hospital. He didn’t want to go ahead with the chemo because Rafael’s platelets were only 33 :-(

I told him that we have gone ahead with those numbers before, but he couldn’t make a decision. He tried to call Michael a few times. In the end I suggested he ask Andrew (the Fellow). Well – you should have seen the look on Dr Marty’s face! To him it’s like asking a student for their opinion ;-) I explained that Andrew often signed off Rafael’s chemo and he knows what Dr Michael wants.

That made the process move much quicker, Andrew agreed with me straight away ;-)

By this time, it was after 2 pm and Rafael had been fasting since his breakfast at 9 am :-( He was starving!!! He asked my to buy Chicken Teriyaki and I couldn’t refuse ;-) He didn’t any of the vegetables – of course ;-)

Before we left RCH, Rosie from worked drove over to give us some food se had cooked and brought her cute dog Lola to visit too :-)

4th January

We were given tickets to AAMI Park tonight to watch Melbourne Victory v Brisbane. I was away for work and couldn’t go :-(

The seats were in the corporate section – very nice! Archie Thompson was seated there (out injured) with his family. At ½ time, a lot of children went to get his autograph and chat to him, but Rafael refused! Doh ;-) At least Lela was happy to go and meet him and have her photo taken.

1st January

Another year has arrived. My 7th year of blogging - and I hate writing ;-) That also means 7th year of fighting this beast, although technically, July will be 6 years :-(

We are in such a scarier place than we were this time last year :-(

Rafael is still planned for 3 weekly cycles of chemo, however, after the next round, his chemo will be changed to a higher type, not as high as “High Dose” but it will knock him around a lot more than the cycles’ he’s been doing the last few months :-(

He will have a few baseline tests done before that cycle and then he will be admitted for 7 days of chemotherapy.

The plan is to repeat the same dose 3 weeks later, but Dr Michael (and us) doesn’t think his counts will recover in time, so it might be 4 weeks apart instead. If it starts stretching out to 6 or 8 weeks, then we’ll have to change the “plan”.

Here is the current plan: -

22/1/2014 - BMA/Trephine & admit for a 24 hour test of hyper hydration without chemotherapy.  Assess urine output and GFR on 125 ml/m2/24. Take urine for tubular function.

27/1/2014 - Admit for TVD (Topotecan, Vincristine & Doxorubicin)
“Patients receive topotecan hydrochloride IV over 30 minutes on days 1-5 and vincristine IV continuously and doxorubicin hydrochloride IV continuously over 48 hours on days 5 and 6. Patients also receive G-CSF subcutaneously beginning on day 9 and continuing until blood counts recover.”

Aggressively manage nausea/vomiting and fluids to see how well he copes with intensified therapy.

Cardiac Echo and Dexrazoxane.

Post TVD - for continuous GCSF, and commence second cycle when counts recover

Post TVD - on Day 10 -14 do CD34 counts to assess the potential marrow reserve and mobilisation

Give TVD x 2 and reassess BMA, MIBG scan - then a further TVD x 2.

If we can achieve a Bone Marrow (BM) remission of Minimal Residual Disease (MRD) state, we may be able to look at the option of High Dose therapy

Sounds like a good plan for now ;-) Let’s see how Rafa’s body copes with that much chemo :-(